my dog ate my GI cancer risk evaluation forms

“I think people say something is a “perfect storm” when what they really mean is that it’s a shit-storm.”

So maybe what hit me today after I returned from court was just a perfect little shit-storm.

A few things converged today, unexpectedly: the faint, but nonetheless palpable residual effects of the anniversary of my diagnosis (damn you, December!); anticipating a three-month check-up on Monday ( “little bit of pressure…OK, a LOT of pressure…”); and the pile of forms that I need to fill out so I can get myself hooked up with the genetics people at Penn who are going to tell me how many times a year I need to have a camera shoved up my ass, in an effort to detect early the colon cancer which I am genetically pre-ordained to get.

Yes, I am being dramatic. No, it’s not pre-ordained that I will get colon cancer, another varietal in the lovely disease bouquet that comes with the HNPCC mutation common in my family, and which it seems quite apparent that I have.

My oncologist referred my case to this program at Penn many, many months ago, and they promptly sent me a huge pile of forms to fill out, in which I am to detail every incidence of cancer in my family dating back to the Paleozoic Era. And like some kind of non-compliant loser, I just haven’t done it.

The last few times I’ve been for check-ups, my onc has casually asked, “Did you ever get connected with those GI genetics people?” Sheepishly, I have told her “no” each time, that I was waiting to get more information on my family’s medical hisotry, blah blah blah. Basically telling my oncologist that my dog ate my homework.

Why am I acting like such an asshole about this? All I want to do is be the perfect patient – go for every rotten test and screening, go for my insanely frequent check-ups, whatever is asked of me. Ever since I was first diagnosed, I would say things like, “I want to be the perfect patient. I want to get an “A” in patient-dom.” And yet for months on end, I haven’t been able to sit down and bring myself to fill out these goddamn forms.

WHY?

Because I know that once I do, I’ll get a call from some pencil-necked geneticist, and that I’ll be hauled in for an appointment where they will sit down and tell me how many instrusive tests and screenings I’ll need to have every other day. And all it will do is stir up this feeling that it is only a matter of time until I am hit with some other flavor of cancer, a recurrence of my first cancer, or hey, why not BOTH?

I know it’s irrational. I mean, what the fuck? I already had cancer. It’s not like I don’t know what that feels like, and it’s not like if I sit down with a genetics dude that he’s going to tell me, just by looking at me, “Well, I can clearly see that you have cancer again.”

It’s all about surveillance and early detection and vigilance and blah blah blah. I should be glad to have this resource available to me. Instead, it feels like I am scheduling a lunchdate with the Grim Reaper.

Over time, I have been able to get away from this feeling that I am a ticking time bomb, that I am destined to die young because of my cancer history. In truth, I felt like fear ruled my life to a much greater extent before I was diagnosed. In a lot of ways, getting cancer has been liberating: it happened, this thing I always feared, and look! I’m still here!

But for some reason, this task of sitting down with paperwork and pouring over piles of notes about my family medical history just feels like a total buzzkill.

I have been feeling so great – so strong and powerful and undaunted, surrounded by so much amazing love and support – that getting tripped up today felt downright weird. This is not who I am any more.

Yet it all makes perfect sense.

Still, when I took myself into the bathroom to have a little cry this afternoon, just to get some of the toxicity out of my system, it was incredible to realize how easy it was to pull myself out of the muck. Just by letting my heart fill with thoughts of all of the courageous, powerful people I have gotten to know since cancer was enough to lift me up. I thought of everyone – Fridge and Double-Oh and Jennie and Beth and Annette and Tanja and Alli and Becki and Hollywood and Bald Fox and the list goes on and on. All I needed was all of those stories, a moment to pause and reflect on those other human beings out there in the world, doing their thing, living their lives, to remind me that in that moment of feeling lost and overwhelmed, I was not alone.

Pretty neat trick, wouldn’t you say?

LATER (8 PM)

OK, this is the part where I hang my head and make puppy dog eyes and feel really embarrassed about how I let a few pages of questions about my health get me all out of whack.

First, observe:

I did it! With my sweet and patient husband at my side, I finally filled out these fucking forms, which tomorrow will be scanned and emailed to the “Gastrointestinal Cancer Risk Evaluation Program at the Division of Gastroenterology, Department of Medicine University of Pennsylvania Health System.” As it turns out, the name of the program is longer than the forms I completed. So here I sit, feeling like a skittish little kid who is convinced that there is a 20 foot alien zombie lurking in my closet, only to have the light switched on and realize that it’s just the silhouette of a cast-off stuffed animal.

I’m not too embarrassed, though. In spite of today, I know that I am handling the new reality of my life as a survivor with about as much grace, strength and levelheadedness as can reasonably be expected.

[...] aunt Sally carry. (Did I just violate HIPAA? Sorry, guys!) I had overcome the major hurdle of filling out all of the forms for the genetics program a few months back, and then waited and waited for a call to schedule an [...]